How are we helping the cavernoma community?
Since 2005, Cavernoma Alliance UK has grown from a volunteer led organisation founded by Dr Ian Stuart to a UK wide registered charity with over 4,000 members, 4 part-time staff (equivalent to one and a half full-time people), and 50+ volunteers. Last year:
- 1,300+ emails/calls answered support through our helpline
- 296 people became new members of our charity
- 78 people issued with a free personalised medical alert card
- 66 people benefited from free counselling and/or being matched with a buddy
- 20 online webinar and monthly chats held, alongside the launch of 2 new case-study films
- Co-funded the start of the UK’s first pioneering gene therapy research led by University College London
- Patient Advisory Group lead for the Cavernomas: A Randomised Effectiveness (CARE) Study
Cavernoma Alliance UK runs a helpline offering practical and emotional support, provided by volunteers with lived experience of cavernoma. You can email us at helpline@cavernoma.org.uk or book a telephone call by clicking here. We aim to reply within 3 to 5 working days.
Each year Cavernoma Alliance UK needs to raise over £85,000 to keep its services running. If you would like to help by donating, click here to make a one-off or monthly donation. If you would like to help by volunteering, click here to express your interest.